ObjectiveTo produce a strategic roadmap for supporting the development of dementia research in Pakistan.BackgroundWhile global research strategies for dementia research already exist, none is tailored to the specific needs and challenges of low- and middle-income countries (LMIC) like Pakistan.MethodsWe undertook an iterative consensus process with lay and professional experts to develop a Theory of Change-based strategy for dementia research in Pakistan. This included Expert Reference Groups (ERGs), strategic planning techniques, a “research question” priority survey, and consultations with Key Opinion Leaders.ResultsWe agreed on ten principles to guide dementia research in Pakistan, emphasizing pragmatic, resource sparing, real-world approaches to support people with dementia, both locally and internationally. Goals included capacity/capability building. Priority research topics included raising awareness and understanding of dementia, and improving quality of life.ConclusionThis roadmap may be a model for other LMIC health ecosystems with emerging dementia research cultures.
Objective: the aim of the present study was to characterize the clinical pathways that people with dementia (PwD) in different countries follow to reach specialized dementia care. Methods: we recruited 548 consecutive clinical attendees with a standardized diagnosis of dementia, in 19 specialized public centers for dementia care in 15 countries. The WHO "Encounter Form", a standardized schedule that enables data concerning basic socio-demographic, clinical and pathways data to be gathered, was completed for each participant. Results: the median time from the appearance of the first symptoms to the first contact with specialist dementia care was 56 weeks. The primary point of access to care was the general practitioners (55.8%). Psychiatrists, geriatricians and neurologists represented the most important second point of access. In about a third of cases, PwD were prescribed psychotropic drugs (mostly antidepressants and tranquillizers). Psychosocial interventions (such as psychological counselling, psychotherapy and practical advice) were delivered in less than 3% of situations. The analyses of the 'pathways diagram' revealed that the path of PwD to receiving care is complex, diverse across countries, and that there are important barriers to clinical care. Conclusions: the study of pathways followed by PwD to reach specialized care has implications for the subsequent course and the outcome of dementia. Insights into local differences in the clinical presentations and the implementation of currently available dementia care are essential to develop more tailored strategies for these patients, locally, nationally and internationally.
Efforts to build research capacity and capability in low and middle income countries (LMIC) has progressed over the last three decades, yet it confronts many challenges including issues with communicating or even negotiating across different cultures. Implementing global research requires a broader understanding of community engagement and participatory research approaches. There is a considerable amount of guidance available on community engagement in clinical trials, especially for studies for HIV/AIDS, even culturally specific codes for recruiting vulnerable populations such as the San or Maori people. However, the same cannot be said for implementing research in global health. In an effort to build on this work, the Pakistan Institute of Living and Learning and University College London in the UK sought to better understand differences in beliefs, values and norms of local communities in Pakistan. In particular, they have sought to help researchers from high income countries (HIC) understand how their values are perceived and understood by the local indigenous researchers in Pakistan. To achieve this end, a group discussion was organised with indigenous researchers at Pakistan Institute of Living and Learning. The discussion will ultimately help inform the development of a cultural protocol for researchers from HIC engaging with communities in LMIC. This discussion revealed five common themes; (1) religious principles and rules, (2) differing concepts of and moral emphasis on autonomy and privacy, (3) importance of respect and trust; (4) cultural differences (etiquette); (5) custom and tradition (gift giving and hospitality). Based on the above themes, we present a preliminary cultural analysis to raise awareness and to prepare researchers from HIC conducting cross cultural research in Pakistan. This is likely to be particularly relevant in collectivistic cultures where social interconnectedness, family and community is valued above individual autonomy and the self is not considered central to moral thinking. In certain cultures, HIC ideas of individual autonomy, the notion of informed consent may be regarded as a collective family decision. In addition, there may still be acceptance of traditional professional roles such as ‘doctor knows best’, while respect and privacy may have very different meanings.
Background: Suicide is a serious public health problem, ranked amongst the leading causes of death worldwide. There are no official data on self-harm and suicide in Pakistan; both are illegal acts, and are socially and religiously condemned. This study explored the views of clinicians, including general practitioners (GPs) and hospital physicians (HPs) on self-harm, about their management of people who self-harm and what interventions might be appropriate in Pakistan.Methods: This qualitative study, generating data using semi-structured interviews, was nested within a Randomized Controlled Trial (RCT) of a psychosocial intervention for people following self-harm. Clinicians (n = 18) with experience of treating people who self-harm were recruited from public hospitals and general practices.Results: Face-to-face interviews were conducted in Urdu and digitally recorded with consent, transcribed and translated into English. Transcripts were checked for cultural and interpretive interpretations by the research team, then analyzed thematically using the principles of constant comparison. The following themes will be presented: encountering people with self-harming behaviors; challenges encountered in managing people who self-harm; barriers to accessing care, and what ideal care might look like. Participants identified their lack of training and expertise in the management of people with self-harm behavior.Conclusions: This is the first study to explore clinicians’ perspectives on self-harm in Pakistan. The study highlighted the need for training for doctors in the identification and management of mental health problems, including the management of people who self-harm.
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